Child Health
Recognizing the Signs of Pediatric Growth Hormone Deficiency: How Early Recognition and Advocacy Helped One Family Find Answers
Diane Benke noticed her son Alex’s height concerns starting at age 7, despite his pediatrician’s reassurances. After persistent worries, they consulted an endocrinologist, leading to a diagnosis of Pediatric Growth Hormone Deficiency (PGHD). Following treatment changes, including a switch to weekly hormone injections, Alex’s growth improved, allowing the family to focus on their well-being.
Last Updated on February 5, 2026 by Daily News Staff
(Family Features) “Our concerns about Alex’s growth began around the age of 7,” said his mother, Diane Benke.
Though Alex measured around the 50th percentile for weight, his height consistently hovered around the 20th percentile. Benke’s instincts told her something wasn’t quite right.
“I kept asking our pediatrician if this could mean something more,” she said. “Each time, I was reassured that everything was fine. After all, I’m only 5 feet tall myself.”
At first, Benke tried setting her worries aside. Alex was one of the youngest in his class, and she wondered if he could simply be a “late bloomer.”
However, as Alex progressed through elementary school, particularly in the 4th and 6th grades, his height percentile dropped into the single digits. The height difference between Alex and his peers became impossible to ignore.
Despite Benke’s growing concerns, their pediatrician continued to assure them Alex was fine.
“We were told as long as he was making some progress on the growth chart, there was no need to worry,” she said, “but we were never actually shown the charts.”
It wasn’t until one of Benke’s friends confided that her own daughter had recently been diagnosed with Pediatric Growth Hormone Deficiency (PGHD) that she decided to seek an endocrinologist.
“Although it took several months to get an appointment,” Benke said, “we were determined to get more answers.”
Navigating the Diagnosis Process
Getting a diagnosis for many medical conditions can be a long journey. However, early detection and diagnosis of PGHD is important. It can help minimize the impact on overall health and support optimal growth.
Once Alex was seen by a pediatric endocrinologist, he underwent a series of evaluations, including bloodwork, a bone age X-ray to compare his chronological age with his skeletal age and a growth hormone stimulation test, which measures the body’s ability to produce growth hormone. He also had a brain MRI to rule out the potential of any pituitary abnormalities.
The results of these tests confirmed the diagnosis of PGHD, a rare condition that occurs when the pituitary gland does not produce enough growth hormone. PGHD affects an estimated 1 in 4,000-10,000 children.
Some common signs parents might notice include: their child being significantly shorter than other kids their age, slower growth rate over time, delayed puberty, reduced muscle strength or lower energy levels, slower bone development and delayed physical milestones.
“Receiving Alex’s diagnosis was a relief,” Benke said. “It provided clarity and a path forward.”
Moving Forward with Treatment
“While the diagnosis process was exhausting, starting treatment made the process worthwhile,” Benke said.
For decades, daily injections of a drug called somatropin, which is similar to the growth hormone your body produces, have been the standard of care for PGHD. It wasn’t until 2015 that the Growth Hormone Research Society recognized the need for a long-acting growth hormone (LAGH), offering once-weekly dosing as an alternative to daily injections.
Benke explained navigating the insurance approval process was another challenge.
“Our insurance required us to try a daily medication before approving a weekly option,” she said.
Alex spent three months on daily medication, often missing doses, before he was approved to switch to a weekly treatment option.
“The weekly option made such a positive impact,” Benke said. “We now have minimal disruptions to our daily routine and Alex hasn’t missed a single dose since.”
Beyond a more convenient dosing option, the change gave Benke peace of mind.
“We could focus more on being a family again, without the daily worries of his next dose,” she said.
If you’re concerned about your child’s growth, talk to their doctor as soon as possible. Early diagnosis is important, as treatment becomes less effective once a child’s bones stop growing.
Benke’s advice to other parents: “Trust your instincts. If something feels wrong, seek out a specialist and push for answers and don’t give up, even when faced with hurdles… Stay hopeful and persistent – it’s a journey worth fighting for.”
Visit GHDinKids.com to download a doctor discussion guide to help prepare for your next appointment.
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Skytrofa
Food and Beverage
A Lesson in Kindness, Inclusion and How Kids Eat Differently
Kids Eat Differently: The school year brings new classmates, routines and opportunities for children to learn about people whose experiences may be different from their own. They could include friends who use a wheelchair, carry an inhaler or even receive nutrition through a feeding tube.
A Lesson in Kindness, Inclusion and How Kids Eat Differently
(Feature Impact) The school year brings new classmates, routines and opportunities for children to learn about people whose experiences may be different from their own. They could include friends who use a wheelchair, carry an inhaler or even receive nutrition through a feeding tube.
Watch this video to learn more
For families who rely on tube feeding, it is an essential part of daily life but is often understood only by those who experience it. That limited awareness can leave children who are tube fed and their families feeling isolated or unseen, according to Gerard Minor, a pediatric gastroenterology and hepatology specialist.
Parents can use everyday questions as opportunities to help children understand there are many ways people receive nourishment. Teachers, classmates, caregivers and communities can also help make tube feeding part of the everyday conversation around childhood rather than something that separates children from it.
“Helping children understand those differences early can encourage curiosity, kindness and inclusion,” Minor said.
To help bring greater awareness, understanding and representation to children and families who experience tube feeding every day, Compleat, a leader in tube feeding formulas, launched “What Is Better Than How,” featuring “Sesame Street’s” Elmo and his signature warmth and curiosity. The original song celebrates the many ways people eat. Some people eat with a fork, some use a spoon and some use a tube, reinforcing a simple message: What matters is not how you eat. What matters is that you are nourished, loved and included.
To hear the song, create a personalized version and learn more about the campaign, visit Compleat.com/WhatIsBetterThanHow.
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Child Health
Changing the Landscape of Childhood Cancer Survivorship
Childhood Cancer: hile “cancer” is a term no family wants to hear, especially when it comes to their children, there is reason for hope. Today, 85% of children diagnosed with cancer survive at least five years. Survival is only part of the journey, however.
Changing the Landscape of Childhood Cancer Survivorship
(Feature Impact) While “cancer” is a term no family wants to hear, especially when it comes to their children, there is reason for hope. Today, 85% of children diagnosed with cancer survive at least five years, according to the National Cancer Institute, up from 75% three decades ago.
Watch this video to learn more
“This progress is driven in large part by dedicated research,” Hyundai Hope on Wheels Board Member Kevin Reilly said. “Over the last 28 years, Hyundai Hope on Wheels has committed over $300 million in pediatric cancer research and program grants, awarding more than 1,600 grants to 210 medical institutions nationwide, impacting thousands of young lives each year.”
Survival is only part of the journey, however. Nearly half (46%) of U.S. adults believe a child ringing the hospital bell after cancer treatment means the child is cancer-free and their medical journey is largely over, according to a survey conducted by Atomik Research on behalf of Hyundai Hope on Wheels. For the children and families living through a diagnosis, the reality is far more complex.
“The reality is that healing continues long after treatment, which is why sustained investment in survivorship care is a priority for us,” said John Guastaferro, executive director of Hyundai Hope on Wheels.
Isabella Franco-Capps, 11, understands that journey firsthand. Diagnosed with B-cell acute lymphoblastic leukemia at age 5, her journey took two years before she could say she’s “a cancer survivor.”
“I was diagnosed with b-cell acute lymphoblastic leukemia,” she said. “This began my two-year-long journey of scans, pokes, chemotherapy and hospital stays. And now I’m a cancer survivor.”
Fellow Hyundai Hope on Wheels National Youth Ambassador, Jackson Trihn, 12, is using his voice to call for continued research and to bring hope to others.
“The role … is being able to share my story,” he said. “Not just to spread awareness but to spread hope to kids that need it. And awareness is so important because people don’t understand how hard pediatric cancer can be.”
Continued progress can help ensure more children ring the bell and receive the care and support they need long after they’ve had the opportunity to do so. To learn more about these efforts and how you can help, visit HyundaiHopeOnWheels.org.
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Women's Health
From Pregnancy to Parenthood: How Medicaid Supports Women Across the Maternal Health Journey
When women are planning, expanding or raising families, access to healthcare is a vital source of physical and mental support. For millions of women and families across the U.S., Medicaid provides that support, enabling parents and children to access the reproductive, maternal and pediatric healthcare they need to thrive.
(Feature Impact) When women are planning, expanding or raising families, access to healthcare is a vital source of physical and mental support. For millions of women and families across the U.S., Medicaid provides that support, enabling parents and children to access the reproductive, maternal and pediatric healthcare they need to thrive. It’s there for anyone who needs it, from working adults to families navigating unemployment or disability.
To learn about how Medicaid supports growing families through every stage of the parenthood journey, consider this information from the maternal health experts at Community Catalyst.
Making Family Planning Possible
When people are able to plan and prepare to welcome children into the world, it can remove a lot of stress, uncertainty and complication from their journeys. Medicaid family-planning coverage may include reproductive health counseling, pre-pregnancy screenings, many forms of FDA-approved contraception and other preventive services. Comprehensive access to birth control allows women and couples to make their own decisions about pregnancy timing or spacing between siblings.
Supporting Healthy Pregnancies
Pregnancy is no small endeavor, and a woman with a healthcare team at her side is better prepared to face whatever challenges may arise. Pregnancy often requires frequent appointments for ultrasounds, laboratory testing and monitoring – all of which are made possible and affordable through Medicaid. Since 1 in 4 Medicaid recipients are women ages 15-49, this care can make a difference during their childbearing years.
Covering Labor and Delivery Costs
Labor and birth can be unpredictable, but being able to afford them shouldn’t be. Without Medicaid, which finances approximately 41% of U.S. births, based on data from the National Center for Health Statistics, the cost of hospitalization and delivery could be financially devastating to young families. Coverage for labor, delivery and NICU care, if needed, gives parents the ability to focus on their new babies instead of overwhelming medical bills.
Providing Postpartum Care
The need for maternal healthcare doesn’t end when mother and child are discharged from the hospital. Physical recovery takes time, especially if there were any complications during the pregnancy or delivery. Beyond that, postpartum women may need mental health support, treatment for chronic conditions, contraception renewals and other health services that Medicaid can provide. Currently, 49 states plus Washington, D.C. have extended postpartum Medicaid coverage to 12 months, which helps new mothers get continuous care without worrying about insurance lapses.
Caring for Growing Kids
Nearly half of all Medicaid recipients in the U.S. are children ages 0-18 – and sometimes kids qualify for Medicaid even when their parents don’t. The program can help new parents stay up to date with well-child visits for infants, immunizations and ongoing preventive care throughout childhood.
To learn more about access to essential services at every stage of life, visit communitycatalyst.org/maternalhealth.
Filling Gaps in Pregnancy and Postpartum Care: Kayla and Tru’s Story
When Kayla found out she was pregnant at 24 years old, she had no idea how she was going to afford all the costs that were coming. Despite having part-time employment and primary insurance through her mother, she faced gaps in coverage for pregnancy care.
Qualifying for Medicaid changed everything. Not only did it cover Kayla’s prenatal visits, labs, ultrasounds and delivery, but once her son Tru was born, both mother and baby required an extended hospital stay. Medicaid made it possible for Tru to get the care he needed in the NICU while Kayla recovered from birth complications.
Afterward, the program continued to cover Kayla and Tru for follow-up appointments and well-child visits. She’s grateful it was there during her time of need and has one simple message to share: If you qualify for Medicaid, apply.
“You never know what’s going to happen,” she said. “I didn’t expect to be in the hospital as long. I didn’t expect for him to be where he was. But it was definitely needed and helpful.”
Photo courtesy of Shutterstock (mother leaning over hospital bassinet)
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